This Is It

I feel like this could be a dark post regarding subject matter, but it isn’t how I feel at all. 

Under quarantine and with jeopardized  immune system I’ve primarily stayed at home. 

I’m going to declare now that I feel incredibly happy and light. I think I can justify to you why I feel that way. 

My backyard is a paradise and I’ve never appreciated living here like I do during this quarantine. I used to lament about how far away I was from everything. Now, I’ve come to realize, there’s really nowhere if rather be. 

I started my new chemo (Neratinib) and the side effects can be rough, but having my Mom here for company has changed my life. Giving in finally (I am stubbornly independent) to having someone help me, and having someone to talk to during the day (most days I wouldn’t speak until Jeff got home!) makes such a difference.  My quality of life is Better then it had been in a long time - even when I felt ‘fine’ on my last treatment. 

I know the change in weather has instantly affected me - I love and thrive in the sun. My dark periods of the past have always started in January and sometimes I was really desperate. 

It could be those reasons but here is my theory:

I’m at peace.

I’m wary to say that so plainly. 

It’s something I’ve battled since my Stage 4 MBC diagnosis in 2016. I did the begging to above. I made a list of things I wanted to achieve. I was sad for so long about a terminal diagnosis. No amount of meditation made me feel better. I was sad underneath it all. I buried it so far down. My meds made it impossible for me to cry. Yet, if you caught me at 2AM or when I forgot to take my medication, the sadness was at surface level and I couldn’t hold it back anymore. 

This wasn’t how it was supposed to turn out for me

Years I’ve spent battling this idea. I could never accept it: I’ve spent a lot of time with myself where I’ve gone over my diagnosis - 5 years later and I still can’t believe I have cancer. I always was getting used to this new normal - it never became ‘normal ‘ to me. 

I had an appointment with my oncologist that brought up some sensitive subjects when it was clear I was running low on options. 

Long story short: there is presently no trials I qualify for, Tucatinib is not approved in Canada yet and due to multiple times of stereotactic radiation, two craniotomies and whole brain radiation - there isn’t a lot that can be done up there anymore! (Never say never thought!)

I felt so conflicted and defeated. I hadn’t come this far to let my mental strength break. I didn’t feel at peace with this breast cancer diagnosis though. 

I spoke to my therapist (someone who basically saved me mental health), and she urged me to say something to those I loved.  I pleaded for their reassurance that regardless of what happened to me, they would be okay. 

My therapist expressed me to that this is my time. My life. I can’t take on how you are dealing and processing my diagnosis - I have enough worrying to do on my own. I felt guilt. I think that’s common for those that are critically ill.

Not only did it open up conversation and break a barrier between myself and the people I love the most, it was then I felt automatically free. 

I felt enlightened and it allowed me comfort. I finally felt enabled to make decisions based on just me. How I felt. I’m feeling this was, I actually feel stronger then ever. To have the knowledge that this can go either way and it’s going to be okay - that was the secret for me to go forward. 

I’m not worried going into scans and appointments. It feels so strange. I wondered if writing this was just a way to reassure myself and mask my fear going forward but it isn’t that. I genuinely feel like this is what peace feels like. Something I’ve been struggling to find and achieve for 5 years. Has it really been that long? It has felt like a whole life and I’m the other hand, just a few days. 

In closing, I feel happy going into my next treatment. I understand it will be tough going forward but whatever happens to me next - good or bad - feels like something I can deal with. 

xx

Sam 

5 Ways To Handle A Quarantine

Rethink Breast Cancer

I have started this post so many times. First, it was a look at the downward spiral COVID-19 is bringing to the whole world. Then, it was about how unfair the Coronavirus is on cancer patients. Lastly, I made a “funny” post detailing how hard it was for everyone to live the quarantine life - one that I’m very familiar to.

None of them felt right. I felt like I was over-exaggerating, feeding into the fear mongering. I felt as if I was looking for pity, screaming “Don’t forget about cancer!” during a global pandemic. Being funny seemed wrong; it wasn’t the time or place to feel satisfied with a big ol’ “I told you so!”.

A couple of days ago Jeff asked me if he should still post his pictures of new beer he was carrying on Instagram (@beeratbrowns).He posted a poll asking if his viewers thought it was insensitive and the answer was an overwhelming NO - anything to take my mind off of March 2020 PLEASE!

The best way to describe how I’m feeling right now is happy, sad, and worried all at the same time. It’s how I’ve felt the better part of 4.5 years. It’s likely how most of you are feeling now. 

Everyone is affected; you’ve been laid off, you are elderly, your parents are elderly, can I still walk my dog? My kids are driving me crazy! Amazon workers have the virus?! I can’t eat Chinese food anymore! My massage was cancelled? HOW WILL WE COOK FOR EASTER?! Stay home! Stay home! Should I make my own mask? “My ratings are higher then the finale of the Bachelor!!!!!”. 

You are being asked to work HARDER under dangerous circumstances. You are afraid and lonely and doing your best. 

I’m not going to make this about cancer. Just some things I’ve learned after spending a lot of time alone. Mistakes I’ve made so that you don’t have to make them.

I don’t have kids. I don’t go to the gym or excercise (like at all) (even before cancer). My life is way different then yours. I’m just speaking from my own experience. 

When you’re alone for hours on end, it’s hard to quiet your mind. Your brain jumps to things you could be accomplishing with all of this time, the dread of getting up to another day of nothing, and instead of doing anything, mindlessly scrolling. 

By the time your day has ended you’ve had way too much time to think about what a failure you are - unproductive with your time. You should be doing online yoga, enhancing your cooking skills, cleaning out the graveyard of hair products under your bathroom sink! You should be saving hundreds of dollars (the need for a Nintendo Switch was real though!), and less time worrying about how your artificial nails are going to grow out and watching YouTube videos of stylish quarantine haircuts. 

Mood swings are normal when your mind goes from Netflix (Carole Baskin fed her husband to the tigers), to craving someone new to talk to, a change of scenery, and thinking about your inevitable death all in an 8 hour span of time. 

Being at home is the hardest thing I’ve ever done. 

It caused me years of depression, anxiety, hopelessness and self hatred.

It still does, some days. I told Jeff yesterday that I wasn’t feeling good. Those are the words I use when I can’t describe how I’m feeling or where it’s all coming from. I can talk to my parents on the phone like normal and then hang up and have a break down. 

It sounds great to stay at home every day! 

I’ll write a bestseller, get perfect skin with all of those facemasks I’ll be applying, read all of the books, do all of the things! 

No, you won’t. 

I’m here to tell you that it’s okay to be unproductive sometimes. Even though you have this time, it doesn’t need to be filled. Sometimes taking care of yourself and others means having a nap or eating a bag of chips (I know this isn’t just me). I can’t say this without saying that 75% of the time I don’t abide by these rules. I make myself feel like shit all the time, then I flip on Animal Crossing and I forget what I was worried about to begin with. 

My problem was/is not having a routine. You probably feel that way too. Eating all the time because your meals aren’t structured. Or forgetting to eat, next thing you know it’s 6PM and you’ve only had 2 girl guide cookies and haven’t been outside in two days.

Let me speed up the stay-at-home process for you: 

1) Do not put daily pressure on yourself to be productive.

This doesn’t mean give in to laziness. It means it’s ok to lie on the couch browsing Pinterest for an hour. Balance!!

2) Do not get consumed with all of the negative news

The Ottawa Hospital has something called “My Chart”, where you can access all of your scans and results. I have never ever logged in. 

That’s how I’m able to function. I put severe blinders on. I’m happy to let my health care team tell me what I need to do in exchange for results that will tell me if my cancer is “bigger” or “smaller”. I don’t want detail. When I was newly diagnosed I stayed up until 3AM reading about the life expectancies of breast cancer and had a panic attack. I never googled it again. 

I know this is uncommon, and likely some are thinking how this is negligent, not taking my health into my own hands. I know myself though, and I would get caught in the doom and gloom. I would not be able to separate the overwhelming statistics from leading a good life. 

I’m not saying don’t watch the news. I’m just saying be careful on what you consume. Be mindful of  your mental health. Don’t give in to the person who assures you THEY would never let poisonous chemo into their bodies. They will juice it away! 

Have you tried drinking Alkaline water? (@thecancerpatient)

(Be sure you’re getting your information from legitimate sources (Nancy on Facebook is not a legitimate source) ). 

3) Be mindful when it comes to your diet

Again. Chips. Bagels. Mini donuts. Hot Cheetos. Some of my all time favourite things! 

One time I was staying overnight in the hospital after my last craniotomy and I had slept in chunks of chocolate I had dropped in the bed. The next morning the nurses laughed it off (luckily) knowing it’s was chocolate and not feces. 

In that instant it was okay to binge though - have YOU ever had a craniotomy?! 

Just kidding. You’re allowed to eat snacks. I went overboard for a while thinking all bets were off though when I started staying at home. You pay for it later. With lack of exercise that you normally have, try to adjust for it. Some days are for sour cream and onion chips, some days are for smoothies and long walks (to the end of the driveway). 

4) Get out of bed

This can be synonymous with stop mindlessly scrolling. Stop having anxiety naps. Have the will to get up, get dressed. It may feel like a novelty to video chat without wearing pants, but you still need to prioritize your feeling of self worth. 

I have gone days without looking in a mirror or having a shower. There’s been plenty of days where Jeff has gotten home at 5 and I’m in bed, not having turned any lights on. 

I use the ‘excuse’ that I have cancer (or, for you, quarantining) a lot. That’s fair. We are all going through an unprecedented, weird-ass time. I will tell you though (and my future self in this position) that getting up, showering and taking care of your basic needs has. to. be. a. priority. 

I have never regretted getting up and going. 

 5) Talk to your family, often. 

I talk to my parents and sister every day. 

I have my immediate family. My aunt, my grandmothers, my best friends. I have online friends, work friends, book friends - all those people I now consider my family. They’re always checking in on me. It’s important to reach out to them as well. Especially when you don’t want to. (Talking can mean texting too! I don’t talk to anyone other then Mavvy most days, but I feel just as close to everyone!)

You’ll likely lose touch with some people as well under this isolation. That’s ok. They were just convenient acquaintances anyways.

And an extra!!!!*

Take your medication at the same time each day. 

Your routine is disrupted. You’re used to taking it in the morning at 7AM, on your way to work.

Your routine is disturbed. You’re used to taking it at 9:30PM, but now you’re up past one and you’ve forgotten it altogether.

Tomorrow is a bad day. You can’t wake up. The world is dreary. You skip breakfast to fall back asleep. You get up to go to the washroom and feel guilt that your dog hasn’t been out. You can’t make the effort, though. You just feel so down. You skip your morning medication because you’re out of it. Did you eat dinner? You have less energy because of the lack of food.

Sound familiar?

This was basically two years of my life. It is a never ending circle. You lose track of what day it is. 

Just trust me. You don’t want to go through this. Do the right thing. Take your meds on time. 

* This won’t apply to everyone, but if it does: this is my most important piece of advice. 

peopleiveloved

In the end, I’m not going to tell you that I am the perfect quarantine-er. It felt icky to write things for you to aspire to when I knew them not to be true myself. 

I think the biggest takeaway is treat your mental health the exact same as your physical health. At a time when it’s so easy to get lost in your own head - reach out to loved ones, be mindful of your eating, force yourself get out of bed, don’t worry so much about your productivity (chase what makes you happy instead!), and turn off CNN. 

Dare I say it?

We’re... all.. in this.. together!

xx

Sam